Another surprise to the doctors was that they were able to determine what caused the aplastic anemia in the first place. They originally told us that 70% of the time they never know what causes it...so it was good news that they were able to determine the source. I am happy to say that in this case, neither Darwin or I passed anything on to Caleb through genetics...so the likelihood of any of our other children getting it is very minuscule. The doctor told me that the cause of his aplastic anemia was called Paroxysmal Nocturnal Hemoglobinuria...or PNH.
From the aamds.org (aplastic anemia and MDS) website:
PNH is a rare and serious blood disease that causes red blood cells to break apart. Doctors call this breaking apart "hemolysis". It happens because your blood cells are missing a protein that protects them from your body's immune system.
When your red blood cells break apart, the hemoglobin inside them is released. Hemoglobin is the red part of red blood cells. Its job is to carry oxygen around your body. The release of hemoglobin causes most PNH symptoms.
The reason this is kind of good news is now the doctors can tailor Caleb's treatments to this diagnosis and not do a general, blanket type of treatment on him. The preferred procedure for this condition IS a bone marrow transplant, but they will be able to do some additional precision things that address the PNH. (...and I don't know what those things are right now).
The doctors also told us that Caleb is eligible for a Make-A-Wish, wish! When we told Caleb, he said, "I'm not dying!" Technically...he could die from this condition or complications that stem from it if it is not addressed and treated properly. They told us that he could wish for just about anything and that the wish would be granted after most of his treatments are completed. They said to make it something big that he would remember for the rest of his life.
We feel so blessed right now! God is really watching out for us!! Our prayers (and yours!) are being heard and we feel the blessings and comfort of God daily! Last week was pretty rough, but this week we have received two huge blessings! Thank you for keeping our family in your prayers! We really appreciate all of the prayers, messages of support and those near us who have willing served our family!
This picture just kind of reminds me of our last few weeks. Feeling like we are jumping off a cliff with no parachute and then experiencing an amazing rainbow at the end of our ride!
|Akaka Falls in Hilo, HI|